Tag Archive | Chiari Malformation

Thankful

Every breath and step I take, and every hurdle I conquer is because of Him. Facing each day with Him means nothing is too big to overcome because even when I think I am failing He is picking up and carrying me to the finish line.

High pain days, what can you do?

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Living with chronic illness often means learning to navigate the daily pain and stiffness changes that can be exacerbated by fluctuation in temperature and sometimes food. It means being aware of what your body is always telling you and doing something about it before it is too late. For example, when temperatures rise into the upper 80’s and above, I must be extra diligent with drinking water to stay hydrated, doing my best to stay in cool shaded or air condition places,  and watching for signs my body is may be becoming over-heated. Because of my SCI and Chiari Malformation my body does not sweat normally, I only sweat shoulders up, which means my body cannot cool itself off properly. So, whether I am relaxing in a pool or indoors I must make sure that I do not over-exert and get overheated. In cold weather I must bundle up but make sure I do not become too warm. .Becoming overheated or getting too cold can mean increased headaches, more allodynia which in turns triggers spasms in my back, across my tummy, and down my legs. This usually means having to lay around for the next day or two and/or sometimes longer. So, on high pain days what can you do?

Give yourself permission to recover and accept help

It is not always easy to have to admit that your body is rebelling and that the only thing you can do is find a somewhat comfortable position, take your medication, and just rest. I know for me this is difficult. As a wife, mother, and grandmother I am supposed to be the one that takes care of everyone else not the other way around. Not being able to get up and take care of my family makes me feel down. I hate feeling like I am letting those around me down. But the reality is that our family and friends understand. They only want you to get better. It is perfectly okay to ask for and accept help. Our bodies are telling us Stop! It is time to rest and recover.

 

Distract yourself from the pain

We are all different and like different things so finds what works best. For me sometimes it is putting on my VR helmet and immersing myself in a game, go swimming with the dolphins in Ocean Rift or use the meditation application. I have used this method on many occasions and find that my pain will drop from an 8+ to 5 in about 15 minutes. After about 45 mins. I can remove the mask and relax some.

Another way to distract myself is find a sitcom or movie to watch. With all the different services out there like Netflix, Hulu, and Fire Tv it is impossible not to find something to watch. I often find comedies, old reruns of I Love Lucy, or a great movie on the hallmark channel often help distract my mind from focusing on the pain as much. Look, when your body revolts find ways to make the best of it. Whether you are engrossed in a game or coloring do what helps you distract yourself from the pain.

 

Remember this is temporary

When our bodies misbehave it is easy to fall in the trap of beating ourselves up. It is extremely easy to lose sight of the fact this is only a temporary setback. Often, especially when things seem to be progressing, a minor set back like this seems much more than it really is. It can feel like this is going to last forever and then we start playing the “What if game.” What if I do not improve? What if this means I must start increasing my medications? What if the medications start making more lethargic? And, so on and so on.  Our minds are powerful and if we allow the negative thoughts in, we risk increasing our pain and discomfort. This usually leads to longer recovery times. It would benefit us to remember this is only a hiccup on journey.

Our bodies are complex and sometimes temperamental. Living with high levels of pain is difficult and can drain our ability to cope and cause us to lose hope. It is important to remember that these setbacks are just temporary, and our journey will resume shortly. It is okay to take the time to recover and accept help. This does not mean that this is going to be how things are from here on out. Let us do our best to allow ourselves time reset and recover.

 

Dear Lord, thank you for being the light that guides me through the storms. You renew my faith, hope, and my spirit. Help me to always find You even the most difficult of storms and give you praise through it all.

Modified Yoga is working

A few months ago, I began to do Yoga twice a week to help with flexibility, build core strength, and balance. Because of my injuries and surgeries my muscles atrophied, I lost proprioception and balance. I worked out in a gym setting with a trainer for about 9 mos. prior to starting yoga. Strength and endurance training were and are important, but my balance and proprioception was just inching along and for me to regain the ability to walk without a walker I decided to try a different approach.

In just a few short months there is marked improvement. I am much more steady/balanced. My walking is also improving. Maybe in another 5 months I will be walking without a walker.

This was in early Feb. 2020. I am barely able to lift my rt leg off the ground. I am also very unsteady. This exercise is quite difficult.

This was the same day in Feb. I am again unsteady and lifting either leg is difficult.

This was May 3, 2020. Notice the improvement. There is more control, both legs raise higher and my core strength is much better.

This was back in Dec. 2019. I was very unsteady. My walking is very jerky.

My walking has improved since Dec. I am more balanced and not as choppy. Still needs work, but it is coming along. Who knows what it will be like in another 5 mos.

During these trying times we all need something to hope for. I hope by sharing that I can encourage others to keep pushing and to keep moving forward even if they are baby steps. If I had taken what the doctors told me I would be in a wheelchair. I believe I have a purpose and that is to encourage and share God’s message with others. Regardless what we are facing God is by our side and because He is with us there is nothing, we can’t get through nor accomplish. We are not our disability, injury, and/or our short comings. We are strong and resilient, and we all have a better story to tell.

Regaining confidence

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Recently I decided that it was time to let my sewing machine go. Besides, it
has been just sitting there collecting dust for over three years. Before I had surgery, I was already experiencing diminished feeling in my legs and feet. I could no longer use the foot peddle, but I held out hope that someday  especially aftermy surgery I would be back to making things. Well, that dream disappeared that fateful day when I got out of bed and lost all feeling from the waist down. But in the back of my mind I was still hopeful, as I believe that God gives usgifts and He wants us to pursue them.

So, before I listed my almost new sewing machine for sale, I decided to give
sewing and using the foot peddle one more try. Besides, I had promised my 9 years old grandson I would make him a blanket. He had picked out a soft greenand tan camouflage material with a dark green edging about two months ago with the understanding that it may be a terribly slow process especially if I had to make it by hand. I had resigned myself to having to sew the blanket by hand, but this is what happened.

Not bad for not having used a sewing machine in a little more than 3yrs. Lots of conversations with God asking him for strength, steadiness, and the ability to finish. My grandson loves his new blanket!

Well, looks like I will be keeping my sewing machine and continue creating. Although I doubted myself,God was there to show me that He is there every step of the way . He has restored some of my confidence which had faded in the midst of my injury. God wants nothing more than to restore us and to give us happiness. We can choose to see all the negatives or we can let the past be the past and keep moving forward making new paths. We can always tell a better story.

During our time at home

As everyone is dealing with the changing times it is bringing higher stress levels, more anxious moments, which can lead to eating more comfort foods and less activity. For those living with chronic pain like me, it can be a period of increased pain and discomfort.  Yes, rest is important and can be beneficial, but long periods of inactivity, lying around with no purpose or focus, sitting around focusing on our worries can be harmful and often exacerbates the pain. 

I have adopted a few things that may help you as well. First, if my body is really tired and I did not get much sleep the night before I allow myself a day of rest knowing that maybe after a short nap that I will get up and do something small like stretch or go outdoors for some fresh air (weather permitting). It can even be as simple as sitting up in bed dangling my legs off the side and do some small leg exercises. Sometimes my Allodynia is so bad that very movement causes me pain, and, on those days, I must take extra meds and let my body rest and heal.  But I do my best to get up every day, shower, brush my teeth and get dressed. Being inactive for long periods of time only makes my pain worse and maintaining a normal routine gives my day a sense of direction.

Next, I make sure I am continuing to eat healthy. If you are like me, during higher stress moments I want to reach for comfort foods, such as french fries, bread, chips, and other foods that really don’t have a lot of nutrients in them. But these foods are high in sugar, carbs, and salt which for people living with chronic pain can exacerbate your symptoms. So, as we go to the grocery store and see that the fruits, vegetables and other healthy choices are dwindling, while the candy and snack foods are abundant, Please Don’t Be Tempted. Studies have shown that pain gets worse with processed foods.

I also make sure I am staying as active as possible and I get regular exercise. When weather permits and I get outdoors and go for a walk. Because of my deficits I have to make sure I have someone to walk with me for safety reasons which makes getting out a bit harder. There are a variety of indoor activities you can do to stay active. I do Yoga with an instructor (can be done virtually) at least two times per week.   By moving and getting our hearts pumping we also release endorphins which help reduce the pain.

Getting outdoors as much as possible is also important. Social distancing doesn’t mean you have to stay locked indoors. Take your dog for a walk or make yourself and your family a picnic lunch and sit outside in your backyard like I did recently. Cut some fresh flowers and bring a little bit of the outdoors in to brighten the mood. Enjoy the warmth of the sun and fresh air.  It can help lift your mood instantly.

During times like this it is easy to fall into the negativity trap especially when most of what we see and hear is negative news. We all know that stress worsens pain. Do your best to destress, talk to family and friends, just knowing you are not alone helps. We may not be able to hang out with our family and/or friends right now, but we still require those connections.  You can use things like Skype, Face Time, or WhatsApp or whatever works for you to keep in touch. We may not be able to reach out and hug them, but we can still see and hear them.

It is important not to become isolated because feeling alone only leads us to overdo and/or do activities that cause or exacerbate our pain. We can still assist each other with things like food runs, chores, and/or cleaning. If you know someone with deficits or with chronic pain, ask them what they might need assistance with and if you are the one that is in pain or has a deficit, please ask for help.

While it may be appealing to get everything on your to-do list done, pace yourself. Overexerting yourself will just exacerbate the pain and make it harder to cope. I know personally that when my body is over tired my pain goes up quickly and my ability to deal with the pain diminishes. Don’t attempt chores you’re not up to or know are unsafe.  Getting on a ladder, mopping the floor, or lifting heavy items can wait until someone else is available to help.

We have all wished at some point that we had extra time to catch up things. Many of us have wanted the time to organize your drawers and closets, put together a photo album, mend clothes, or many other things. Maybe you have wanted to start a craft project or puzzle why not give it a try. Why not use this time to reconnect with our inner artist?

It is important for everyone to take one day at a time and to make sure you are getting enough sleep. Our body requires at least 7-9 hrs. of sleep to function better. I know firsthand that does not always happen when you live with chronic pain. For many of us each day is a struggle. Please let’s do our best to stay connected, help each other, get some rest and heal physically and emotionally. God has promised that when we seek Him with our hearts, we will find Him (Jeremiah 29:13). He has also said what we ask for in prayer and believe we will receive (Mark 11:24).  He is the greatest healer and He is with us. So, no matter what tomorrow brings, we’ll get through it together.

Trying Yoga

About a month and a half ago I found a yoga instructor that gives private instruction which was a must for me. I had been wanting to try yoga but knew I could not join a traditional class because of my deficits plus I wanted to make sure that I was being watched carefully to make sure I am performing the moves/poses correctly to prevent any injury. I currently practice yoga with my instructor twice a week and I incorporate many of the stretches into my daily exercise routine (I only perform the ones I know I can do safely on my own).

Warrior pose-It was scary the first time I let go, but over time I have taught my body that I have legs that can hold me. Loosing proprioception has been extremely difficult to deal. I have to reteach my body to know where my lower limbs are in space even when I am not looking at them.

This exercise continues to be a challenge. Not being able to see my legs is difficult. Because I practice and work at it my proprioception has improved over the last 2 1/2 yrs since my injury.

Working to eventually do this without any devices and lift my knee higher. But not bad for only doing this for a little over a month.

This my first time attempting to do this core exercise. I have since been able to do this for about 20 seconds. This was an exercise that was fairly easy for me prior to the injury. Now it takes total concentration. I will conquer this!

During this time of uncertainty, it is important to find a way to relax and destress. Why not try something new such as yoga? If yoga is not your thing then find something that you enjoy doing. Start slow and in no time, you will find that you are doing things you never thought you could. God has blessed us all with special talents/gifts maybe now is the time to discover them.

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